Trepidation and Triumph at CSUNATC2018

When an exceedingly kind friend offered to be my full-time sighted guide for 2018’s CSUNATC conference, I recognized that I was being offered a unique opportunity that could not, under any circumstances, be passed up. I’d spend a few days in idyllic San Diego, learning about accessible technology and basking in the company of a long-time friend whose social and tech savvy can’t be overstated. She promised to help me navigate the conference, escort me to presentations, and provide networking opportunities I’d struggle to obtain on my own. I was elated. I was grateful. I was excited!
I was also terrified.
You see, dear readers, the word “introvert” was coined specifically for me. While I enjoy a rich social circle and do well when representing employers at special events, high-energy occasions like conferences are about as frightening to me as a nest of angry wasps. In fact, if I have to attend a networking event outside of an employment context, I think I’d rather take the wasps, and that’s saying something. Excessive noise, bustling crowds, and unfamiliar environments combine to create a horrifying mix, and nothing but my relentless quest for self-improvement could make me brave it. (Meeting one of my best online friends helped sweeten the deal, but only slightly.)
I knew how fortunate I was to be attending CSUNATC2018, and I felt the appropriate level of eagerness, but part of me was sure I’d need several barrels of courage to manage. For if there is one thing that makes me more uncomfortable and cagey than large-scale, international networking events, it’s being around large numbers of blind people.
Yes, readers: I am afraid of blind people, especially when they get together, and attending CSUN would demand that I not only confront that fear head-on, but that I ask myself, finally, why the fear exists at all.
The gist is this: I went to CSUN to learn about tech. I learned a little, and certainly enjoyed the presentations, but most of the education had less to do with the accessibility world, and more to do with deeply-rooted insecurities so entrenched that I’d forgotten what it was like to question or even acknowledge them.
If you’re interested in my journey of self-discovery, stay with me. If you hoped to read all about promising new tech, I’m sure there are many excellent write-ups by people much better-versed on the subject. Either way, enjoy!

“Let’s play ‘count the blind people!’”

As we weave somewhat drunkenly through the airport, dragging unwieldy luggage and trying not to trample anyone, my sighted guide chatters blithely about how many blind people she sees going by.
“There’s another one! I think that’s the seventh I’ve seen already.”
“Oh God.”
“I’m legitimately afraid of blind people. I mean, they’re okay in small groups, and I love them as individuals, but when we all get together, it’s … I just don’t like it.”
My friend is too gracious to pursue the matter, but it becomes obvious soon enough that my mobility demons, which I’d warned her of previously, are out in full force.
My cane grip must be all wrong. My posture, surely, couldn’t be close to proper. I’m leading with my right shoulder, which is a problem I’ve never been able to correct. Do I ride escalators in a weird way? Am I the only one who doesn’t know print numerals well enough to operate an elevator without brailled numbers? Does it show that I’ve received so little orientation and mobility training I’m not even sure if my rudimentary indoor travel technique is right? Is everyone judging me? Am I a fraud of a blind person?
Oh God, everyone’s definitely judging me.
I want to go home now.

“Let’s get oriented!”

I attend a small orientation tour to learn the hotel’s basic layout, reasoning that I’ll pick the information up more quickly if there aren’t too many people around me. But, as we meander along, passing various significant locations, I lapse into a fog of panic. There is no way one cursory jaunt around this massive hotel will tell me everything I need to know. The only orientation training I’ve ever received was highly specific and route-based, meaning it did not teach me how to master new environments through discovery. I have never wandered in my life—at least, not willingly. Getting lost for fun, exploring, taking a look around … these aren’t my style. Meanwhile, every blind person around me seems to have a mystical sixth sense or, if they are as lost as I am, it doesn’t trouble them. The atmosphere is effervescent, and I feel like an intrusive rain cloud that has accidentally splattered into an unsuspecting sun puddle.
What the hell am I doing here? Who do I think I’m kidding? This was not made for people like me.
I really want to go home.

“You’re not alone. Also, have a tissue.”

It’s been a long day, though for the most part a pleasant one. I’ve listened to enthusiastic Microsoft employees laying out a new and encouraging direction for Windows 10 and its associated accessibility features. I’ve attended a fascinating presentation on disability services departments in academic institutions. I’ve even discovered that the GPS app, Nearby Explorer, has innovative new features to facilitate indoor navigation. My sighted friend gives me sighted guide when I need it, introducing me to what feels like half the world along the way. She makes me sound like someone worth knowing, and I try to keep my impostor syndrome on a short leash. To my shock and delight, people admit to reading my blog—and liking it!
(So, it’s not just my mom and five friends? Cool!)
But now I sit, curled on my bed, offering the less flattering bits of my life story to complete strangers. One of them is an endlessly patient blind O & M instructor. I’m afraid of O & M instructors. (Are you sensing a pattern yet?)
They listen to me ramble despairingly about the inadequate skills training I’ve received; how out of place I feel among more competent blind people; how I am convinced I’m the only one who has ever been this useless at my age; how I must be a uniquely embarrassing failure; and how I’m afraid I will never, ever be anything more than I am right at this moment. In my self-effacement, I remain oddly verbose.
My equally patient sighted friend quietly passes me another tissue, putting her arm around me. This only makes me cry harder.
Then, the two compassionate blind strangers in my hotel room explain that they, too, have struggled. The instructor tells me that I’m far from alone, that it is possible for me to achieve the skill level I desperately want, and that I need not be so willing to let “I’m afraid” be what stands between the life I want and the life I have. Besides, she points out, plenty of blind people are where I am; they just choose not to put a fine point on it. For other blind people out there, the activities I find easy may seem like insurmountable challenges, and vice versa.
“Most of the people who intimidate you by going on about how good their skills are probably have something to hide.”
“I guess that does make sense.”
I plumb deeper, describing all the gaps between the talented and competent professional I know myself to be, and the bumbling wreck my brain insists I am. I was never taught to cut a steak in a way that made sense to me. I hold utensils in an unconventional way because the “normal” way has always felt clumsy. Sometimes, I simply don’t leave the house because the anxiety of existing in my skin is too much.
And, to my genuine shock, I am not alone in any of these things.
“But … why isn’t anyone talking about this?”
“We’re all too busy impressing each other, of course.”
“But I thought I was, like … degenerate.”
“No! You can be better. You can go higher. But you’re by no means the only one.”
“But I’m scared.”
“So was I.”
I am telling strangers the most intimate, shameful pieces of my long-buried trauma. I am exposing, to myself and to people I barely know, why I am so terrified of other blind people. I am opening up to unknown quantities in a way I’ve never done, not even with my friends, my family, myself.
Least of all myself!
And I am not afraid.
I am embarrassed and bemused and a little curious about what it is about conferences that fills you with the insatiable need to connect …
But Good God, I am not afraid.

“Just trust yourself.”

My default state, especially when dealing with new experiences, is “What do I know?”
Several times throughout the four days I spend at CSUN, my friend and I take a wrong turn of some sort, and something in the back of my mind insists we’ve made a mistake, gone the wrong way, gotten mixed up somewhere. Each time, I ignore it.
Each time, I am right.
Each time, my friend grows more playfully exasperated.
“Meagan, you should really try trusting yourself. You know things!”
“I just usually assume I don’t. Like, what do I know about this place?”
“You have good instincts, though. You should listen to them.”
Slowly, tentatively, I begin cataloguing the many instances over the years when my gut has stirred itself to alert me of some poor decision or wrong turn. In every case, if someone I perceived to be more knowledgeable than me disagreed, I became silent at once. Now, after more than a decade of systematic suppression, I don’t even consider speaking up.
Of course other blind people know more than I do.
Of course sighted people know where they’re going.
Of course I’m unqualified. Inexpert. Silly.
I can’t control the fact that I’m clueless about most things.
Or is this a choice I’ve made, one I forgot to unmake?
Is anyone telling me I’m useless, or have I been doing that to myself all along?
Heavy thoughts for a languid California afternoon!
But then, this does seem to be the week for them.

“Yes, it’s scary; and yes, you’re going to do it.”

Thump. Whir. Thump. Whir. Thump.
“What the hell is that?”
“That’s a door.”
“I don’t think we have these where I’m from…”
As it turns out, automatic revolving doors are much more frightening than they sound. Revolving doors are irritating enough; having once been stuck in one, I feel personally qualified to judge. The automated feature brings a whole new level of nightmare fuel, though, especially when you don’t have a clear understanding of how it works. All I could hear was an ominous thumping sound as the door thwacked repeatedly into something as it went round and round at what I considered an alarming speed.
I was open to trying it out, particularly since I was filled with new resolve and I had an O & M instructor with me once again. However, when she described the procedure, which involved me “sticking [my] hand in there so the door can hit it,” I balked a wee bit.
By “balked,” I mean I stood there for what must have been ten minutes, coming up with all the reasons I definitely could not—would not—attempt this.
Finally, I gathered all my courage and approached the door, only to have it hit me squarely in the face.
A little shell-shocked, hiding treacherous tears, I retreated and tried to regroup. Meanwhile, the O & M instructor, her blind friend, and my sighted friend stood by just as patiently as before, acting as cheerleaders and accountability officers in equal measure. Surrounded by all the (positive) pressure, I went for it.
As I leaned heavily on the door and followed it in a dizzying circle, one of my blind companions ran along behind me, shouting jubilant encouragement. It was rather like going on your first water slide, with your proud elder sibling shooting along behind you, utterly thrilled on your behalf.
Such a small thing, really, going through a door. Ridiculous, even. I’m twenty-three, for heaven’s sake. I’m an employed, educated, mostly-functional adult.
But that day, that damn door was everything.

“One more time before you go?”

On the day I was due to leave for home, I tried to cram as much as I could into a few too-short hours. I visited the exhibit hall, demoing a Braille tablet and expressing horror at how loud those new displays are getting. (I compared the scrolling sound to a very angry spider.) I met more people, flexed my extrovert muscles, and even handed out a resume to an accessibility company that was hiring overseas. Just to cap off the quintessential California experience, I drank a hellishly expensive juice blend and caught a few more rays of sun.
Feeling brave, I attempted to travel a little more independently, and promised a handful of new acquaintances I’d connect with them so I could share my writing and social media knowledge. This was a huge step forward, since I find it almost impossible to speak highly of myself outside of job interviews and cover letters.
Just as we were poised to leave the hotel, my sighted friend suggested I truly conquer that automatic revolving door, just to prove to myself I could.
It was tricky, and I grew progressively more nervous as concerned sighted people crowded around, hindering more than helping.
But, dear readers, I did it.
As I came through the door the second time, more joyful than I felt was socially acceptable, my friend literally jumped up and down with sheer happiness, celebrating so loudly I could hear her through the door.
Most people might not understand why this tiny feat was important to me, and few people would appreciate the symbolism of it.
But she got it.
And, for the umpteenth time that week, I remembered: whatever I reveal, whatever I admit to, however I might struggle, I am not alone.
I never was.
And you know what?
Neither are you.


Letting Go Of Normal

Don’t talk about disability. Don’t write about your blindness. Don’t mention anything that makes you different. Feel ashamed of your cane. Never disclose. Blend in. Hide.
Not so long ago, I lived by these rules, and most troublingly, they were of my own making. I’d endured my fair share of awkward stares and been asked to conceal my cane in photographs, but on the whole, I was not discouraged when it came to simply being me. I was blessed with a relatively accepting community that understood blindness was a part of me (but not the only part), and never required me to pretend otherwise.
Yet, I felt an overwhelming desire to “be like everyone else.” I suppose most young people seek a sense of belonging, but this ran much more deeply than a youthful herd mentality. I was always a bit of a loner, so wasn’t as influenced by popularity contests as my peers.
Instead, I pursued a much less attainable goal: I wanted total erasure of my disability. Seeming “too blind” was a mark of failure. I’m not entirely sure where it came from, but a persistent sense of shame dogged me everywhere, and while I tried to combat it at different points and never resorted to refusing to use a cane, I fought my essential differentness just as fiercely. It didn’t show much, because on some level I knew it was foolish, but I carried a lot of internalized guilt and unhappiness, and the voices in my head told me to erase any traces of perceived inadequacy, which included blindness.
The way I saw it, disability was nothing but a stumbling block. If I was sighted, my life would be ever so much more fulfilling. (I’ve grown a whole lot in the last five years. It’s really rather astonishing.) I fervently believed that disability stood in the way of everything I lacked: a job, a boyfriend, general acceptance, and the right to be “normal.” Blindness certainly interfered with these goals, but assigning sole blame to my broken eyes was far more disabling than acknowledging there might be other factors at play.
When I was introduced to other disabled people who were content with themselves, the problem worsened. I was resistant at first. Why is everyone yelling about disability? Shouldn’t we be stressing how normal we are? Why aren’t we working harder to blend in?
My refusal to be identified with my disability began to permeate my writing, my self-image, even my relationships. I resented it when I needed help, and avoided writing about disability, even when encouraged to do so. I went on and on about how I wasn’t “like other blind people.” No no, I was much more committed to assimilation, and far more aware of my place in the sighted world. All these people placing disability at the forefront of their lives had it all wrong. The key to a better life for us all is to be more like able people! Why don’t they realize this? Why?!
I eventually had to come face to face with an uncomfortable truth: disability is not the only or most important part of my identity, but it matters, and it deserves to be acknowledged. Further, I was forced to admit that pretending my disability didn’t exist, and only referring to it in a self-deprecating, apologetic way wasn’t helping anyone, least of all fellow disabled people. The path to equality did not lie in erasure, but in acceptance. How could others accept us if we did not accept ourselves? How could others understand us if we didn’t open up? Why did it feel so wrong to express myself in the context of a disability I live with each day?
Of course, I still feel squirmy when my blindness is brought up in unrelated discussions. I dislike talking about it in job interviews, at the doctor’s office, in cabs, on the bus, on a street corner. I grow weary of proving that I’m more than my blindness, and that my disability doesn’t hamper other forms of self-expression.
On the other hand, I now feel at ease with bristling when someone suggests I put my cane out of sight. I make blind jokes with joyful humour rather than with shame disguised as mirth. Asking for help is still difficult, but I take it in stride rather than cringing with embarrassment. I speak up. I stand up. I don’t hide anymore.
No, blindness will never be the chief focus of my life, even though I consider myself a disability advocate. I’ll always frame my identity in a much more complex way than as “blind girl.” I am a blind girl, yes, but I’m also a writer, and a communications specialist, and a friend, and a lover, and a daughter, and a sister, and a musician, and a bookworm, and, as my Twitter bio reveals, a fierce defender of the Oxford comma.
All this being said, I hope I will never again believe that the best way forward involves concealment and shame and the quest to disappear completely. I’ve found that, in my own life at least, asserting my humanity is best accomplished by embracing my differences rather than shunning them. The world is far more diverse than many would think, and I’m merely a part of that glorious tapestry of diversity. I don’t have to be proud of my disability, or view it as a superpower, or “embrace” it. No one has to do anything in particular; isn’t that the whole point of our advocacy, in the end? Aren’t we all just focused on giving everyone equal choice and license to express themselves however they wish?
So, talk about disability, as often and as loudly as you want (or don’t, that’s okay, too). Write about your disability. Mention anything that seems relevant, even and especially if it makes you different. Never feel ashamed of your cane or service dog or wheelchair, or any other symbol of your disability. Disclose, if you think it’s wise. Don’t blend in unless you really want to. Most of all, never hide. Whether you live in the spotlight or in the most ordinary of circumstances, never hide.

Accommodation with a Side of Guilt, Please

This evening, I went out to dinner with some friends. I ordered a dish I’ve eaten many times (a salad) only to find that they’ve begun presenting it in a new way: the dressing was in a small cup on the edge of the platter, rather than atop the food as it usually is. I froze, slightly embarrassed. I’ve always had trouble dressing my salad if it’s in a cup. Squeeze bottles? No problem. These give me a certain degree of control. Cups, however, are a different story. (Disclaimer: some blind people have no issue with these whatsoever.) I was just about to ask someone at my table to help when our extremely-attentive server materialized at my elbow:
“Do you want me to take this back and dress it for you?”
“Um…no, it’s okay…it’s just a bit awkward—“
“I totally understand. Don’t worry about it. I’ll be right back.”
Away went my plate. The server appeared several minutes later, saying “Here’s your salad. We have a special rule here where each time food is sent back for any reason, we have to actually make a new dish. So, we just made you a new salad and dressed it for you.”
I was stunned. I had just inadvertently wasted an entire plate of food so that someone could put dressing on top of my salad for me? Forget being slightly embarrassed: I was mortified and, I confess, a little ashamed. While the server reassured me that it was all okay, I silently asked the powers that be to disappear me immediately. They did not oblige.

I’m used to being “accommodated”. Indeed, I often expect it: when I enroll in university classes, each of my instructors is given an accommodation letter, which describes the accommodations I’ll need to participate fully in the classroom. (If I sound like a handbook, that’s because I wrote one—no, really!) I also expect workplaces to make (reasonable) accommodations to the work environment. This is something I’ve been encouraged to view as normal and acceptable. As is typical for me, I have felt heaps of unnecessary guilt over accommodations, even when they are deemed “reasonable”. Once, in ninth grade, my science teacher got together with a few others on staff and made me a periodic table, so I wouldn’t have to use the rather inadequate one in my textbook. My junior high Industrial Arts teacher went out of his way to make sure I could try out all the same equipment everyone else could. He even positioned the end of a nail gun while I fired, showing a remarkable lack of concern for his fingers. (If you’re reading this, I want to thank you. I’ll never forget that one.)

When people go above and beyond the call of duty for me, I feel grateful (healthy) and horribly guilty (unhealthy). Instead of simply thanking people and getting on with things, I waste time and emotional resources worrying about how undeserving or inconvenient or high-maintenance I’m being. While the person who is helping me is busy doing me a favour, I’m busy coming up with all the reasons I shouldn’t be accepting it. Even when I do accept it, as I did with that salad, the shame and humiliation will plague me for days. Yes, you read that correctly: days. This particular incident was so awkward that I’m amazed I didn’t start crying right there at the table; goodness knows I wanted to.

As far as the server was concerned, she was helping a gal out, no more no less. I have no idea what the kitchen staff thought, though I wouldn’t be surprised if they were about a dozen different kinds of exasperated. As far as I was concerned, I’d manage to waste food, fill my server’s time with running back and forth (in a very busy restaurant, I might add) and make a fool of myself all in about five minutes. I’m cringing as I write this, but the more I think about it, the more I realize it needs to be discussed. There are probably a lot of people out there who have felt how I’m feeling right now.

I’m trying to be okay with being accommodated. I’m trying to be at peace with accepting help, and depending on others, and even letting people do me favours now and then. Could I have dressed the damn thing myself? Of course. Would it have been less messy and awkward to have someone else do it? Absolutely. Did I force anyone to do it for me? No. Am I still going to feel awful about it for days to come? Yup.

But should I feel guilty? Most people seem to think I shouldn’t. Accommodations are there for a reason, and in many cases they are universal enough to be made into policy and/or law. But just because it’s not in a handbook or policy statement doesn’t mean it can’t and shouldn’t be done. While imposing unreasonable accommodations on people at work, school, and elsewhere isn’t going to further the cause, it shouldn’t mean that any random act of kindness ought to be rejected.

Should we make a habit of letting people do things for us, especially when we’re capable of doing them ourselves? If you know me at all, then you know I’d never suggest such a thing. However, this does mean that we should be comfortable with accepting what people want to give us now and then. If it’s not a sin to let someone carry your heavy bag, or hold open a door, or grab you a drink (all things sighted people let others do for them on a regular basis) then why not let someone offer kindness if they really, really want to?

I’m learning, guys. I’m learning. But for now…I think I’ll go and have that cry.